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Hi, it’s Patrik Hutzel from intensivecarehotline.com with another quick tip for families in intensive care.

So, today’s tip is about an email that we had from a reader and the email is short, but I think it puts into perspective what a lot of families think in ICU but do not necessarily share with ICU teams because they’re scared of repercussions, or they are worried that they look stupid in someone else’s eyes. But the reality is here at intensivecarehotline.com, we have created a safe space for families in intensive care to share what they’re really thinking.

Here is an email from a reader who says, “My frustration is that I’m wanting to get my mom home from intensive care and give her the care she needs as well as with dialysis, tracheostomy, and ventilation long-term.” So, how can we help this lady to address this frustration?

So, here are a number of things how we can help. We are also providing home care for long-term intensive care patients. Certainly, if your mom needs dialysis, tracheostomy and ventilation long-term, then you may want to check out intensivecareathome.com and contact us there because if that’s what you want, then we can help you with that.

However, like I say over and over again, the biggest challenge for families in intensive care is that they don’t know what they don’t know.  They don’t know what to look for. They don’t know what questions to ask. They don’t know their rights and they don’t know how to manage doctors and nurses in intensive care because what we are often finding when we are getting messages like this, the ICU team is often very negative.

They’re telling the families, “Well, your mom or your dad will never come off the ventilator.”   And then when we work with clients, one-on-one, and we look at the clinical situation when we talk to doctors and nurses directly, when we look at medical records, we then find that your mom might only be one step away from getting weaned off the ventilator. She might be very close but intensive care teams haven’t told you that they have been spinning it very negatively. They have been creating a negative narrative.

Whereas in reality, your mom might be very close to being weaned off the ventilator. Maybe they haven’t mobilized her often enough, maybe they’re not doing physiotherapy or physical therapy. So again, you don’t know what you don’t know.

Weaning someone with a ventilator is an art. It’s not a science, it’s a bit of an art and it often takes time, repetition, and setbacks, and one step forward, two steps back, and then two steps forward and one step back, but the reality is you got to look at it from all angles by when would you need to activate home care?

Weaning your mom off the ventilator, staying in the hospital for another couple of weeks, and then going home would be so much easier rather than using Intensive Care at Home and going home. We’re all for home care. We are in the home care business as well but weaning your mom off the ventilator while she’s in hospital and then going home would be so much easier. So, keep that in mind.

So in your situation, what I would recommend you, is reach out to us so that we can look at your mom’s situation, one-to-one, so that we can talk to the doctors and nurses directly that we can look at medical records and guide you from there because that’s what we are often finding that intensive care teams create a negative narrative, doom, and gloom narrative so that they can stay in control of what they think should be happening. By them creating a negative narrative, it’s much easier for them to “sell you” on an end-of-life situation.

If they have been telling you from day dot, “Oh, your mom will never come off the ventilator.” Then, you might give in and agree to end-of-life even though that’s not what you want, or your mom wants, and your mom again might be very close to coming off the ventilator. They just haven’t told you that.

So, if you don’t do your own research when you’re in ICU, you are fighting an uphill battle. You will never have peace of mind, you will never be able to make informed decisions, let alone have control, power, and influence. Now, to verify everything that I’m saying, I will link towards a podcast below this video that I’ve done with the client recently. The client was in ICU and the ICU team said to the family, “The only way forward here is the end of life. We should be stopping treatment and it’s “in the best interest” of the client to pass away because he won’t have any quality of life if he does survive ICU.” Well, I encourage you to watch the video or the video podcast because the client is actually on the podcast and you can see in the video what happens firsthand if people are given a second chance, if families don’t give into the doom and gloom, and do their own research and get professional help. So, check out that podcast

Now, if you have a loved one in intensive care and you need help, go to intensivecarehotline.com. Call us on one of the numbers on the top of our website or simply send us an email to [email protected] with your questions.

If you have a loved one in intensive care and you want to go home with your loved one, especially for long-term ventilation, tracheostomy , BIPAP (Bilevel Positive Airway Pressure), CPAP (Continuous Positive Airway Pressure), and home TPN (Total Parenteral Nutrition), go to intensivecareathome.com. Call us at one of the numbers on the top of our website or send us an email to [email protected].

We are currently operating all around Australia with Intensive Care at Home in all major capital cities as well as in all regional and remote areas. We are also now starting out in the U.S. so please contact us now.

Also, have a look at our membership for families in intensive care at intensivecaresupport.org. There, you have access to me and my team, 24 hours a day, in a membership area and via email and we answer all questions, intensive care and Intensive Care at Home related.

If you need a medical record review, please contact us as well. We review medical records in real time and also after intensive care, especially if you have unanswered questions, if you need closure, or if you are suspecting medical negligence. But it’s so much better if we help you to review medical records in real time because then you can get a second opinion in real time.

Subscribe to my YouTube channel for regular updates for families in intensive care and Intensive Care at Home, click the like button, click the notification bell, share the video with your friends and families, and comment below what you want to see next or what questions and insights you have from this video.

Thank you so much for watching.

This is Patrik Hutzel from intensivecarehotline.com and intensivecareathome.com and I will talk to you in a few days.

Take care.